My vision is bad so forgive me in advance if you talked about this but has your thyroid been checked?
Many of us have thyroid problems , mostly hypo but maybe yours is hyper which could make you to lose weight.
That is the only thing that came to my mind because my first month of really feeling sick, I was like you and lost 30 lbs in a month, I looked terrible, then my thyroid became hypo and I gained 40+ pounds.
After taking the correct thyroid meds, I leveled off to where I look and feel normal. Could that be why?
My weight has gone up and down a lot with lyme over the years and I've had long periods of being worryingly thin.
I also have a lot of the food allergies and intolerances you mention - gluten, dairy, also egg, soya and various other things.
What has helped me is:
Taking antibiotics for a long time and taking massive amounts of probiotics. This has healed my intestine to the point where I can tolerate a moderate amount of sugar again. it did take over a year to heal to that point, but the more committed you are to probiotics the better.
frequent eating., I was told by a dietician to never go over 3 hours without eating something, even if I could only manage a small snack. I had periods of no appetite at all so I asked friends adn family to keep reminding me. I also left snaks, like bowls of nuts, around the house!
Zinc deficiency is possible, as that is one of the typical deficiencies in lyme disease and it can make you lose your appetite completely. You also stop producing stomach acid with inadequate zinc.
Taking a multi vitamin. I don't know if this is really scientific, but I think various vitamin deficiencies can make you lose your ability to extract proper nutrition from your food. I believe getting richer nutrition this way did help.
Can you eat nuts? They're super nutritious and ultra fattening too!
If things get desperate, you don't need TPN, you need a drink called Neocate.
You have to get it prescribed as it is terribly expensive (it also tastes pretty awful). It is fully digested total nutrition, you can slug lots down and it doesn't upset your tumy in any way because your digestive system doesn't have to do anything to it. There is glucose which you absorb from your mouth and stomach so it doesn't upset your intestine.
I had it for about a year and gained weight, My son lived exclusively on it for 4 months.
BTW I think that sounds like a good idea to check your thyroid if you have any other hyperthyroid symptoms.
I'm right there with you in the 95lb range! It is awful! Family members keep treating me as though I have a choice and that angers me. It is not a case of an eating disorder. My body is just doing it and I have no control! I have asked all of the doctors and have gotten the usual ensure and protein shake answers. Not only, does the sugar and milk bother me too, but I still am not gaining any weight from it! I hope someone has a solution!
As mogogal said, thyroid plays a part. I do have Hasimoto's and have been constantly swinging from hyper to hypo thyroid for years. It wreaks havoc on the body. I wish they'd just cut the darn thing out!
Have any of you consulted with a professional nutritionist?
I used to think it was kind of a made-up job, telling people to eat their veggies, but the more I learned about the side effects of illnesses, whether as a direct effect of the illness or a side effect of treatment, I began to understand the importance of their point of view and advice. I have not consulted a dietitian myself, but in your situations, I would seriously consider it -- one who is affiliated with a medical group or hospital, for instance.
Apparently medical schools don't teach nutrition, which explains why docs are blank slates when it comes to all that. Thus the need for a professional nutritionist. I just searched online for
--- professional nutritionist organizations ---
and got some solid leads to such groups.
If they are properly trained, they could perhaps figure out the right things for you, depending on your ailments, your allergies, and your current condition. You may be able to get one of your docs to write you a referral so that your insurance would cover it; better would be to call your insurance company and say "My doctor may want me to see a nutritionist, so how do I approach that so that you would provide coverage?"
Then you tell the doc, 'Look, I'm scrawny and need help here. Please sign this slip the insurance company wants before they will cover counseling by a nutritionist.'
[[ If that doesn't work, then perhaps seeing a gastroenterologist is an idea, as long as the doc isn't a jackass and takes you seriously. (I've had some bad experiences with gastros, who saw me as a hysterical 30-something female when my appendix ruptured and they sent me home -- twice.) But a gastro may be looking for other issues, not necessarily diet and digestive problems. Depends on the doc -- but just sayin'. ]]
I know, this is all a lot to handle when you're ill, so get a family member or friend to handle the calls and information gathering for you. Good for both of you for acknowledging the issue and wanting to address it. I'd ask your current doc for a referral, and if s/he doesn't have any useful advice, check with your insurance company for local names perhaps, and ask around. If you have a hospital you trust, you could call them and ask if they have a nutritionist on staff. That may be where I would start.
About thyroid, Lyme definitely affects its action, and mine went up and down when I had Lyme. After Lyme was treated and gone, my thyroid settled back into normal and no problems in the years since.
And another thought: there is now milk that is totally lactose-free, and I am for the first time in my life enjoying milk. I get it at the local chain grocery store. It comes in fat-free and also with fat, which may give you useful calories. Absolutely zero indigestion for me.
But seriously: a dietitian. Best wishes to you both -- let us know how it goes, okay?